The Rhythm of the Ups and Downs

Finding rhythm in life is a tricky thing, because it always seems like something pops up that throws us off our game. Or maybe that’s just me. I’m a tremendous creature of habit, and the last few months have been an exercise in creating new habits for myself, and trying to discern which current habits no longer suit my life. Every morning, I eat a banana and some prunes, turn on the coffee, and take my meds. Every Wednesday afternoon, I refill my pill cases for the week. One by one, I drop them into the containers. Usually, Felix helps, dropping cheerios and goldfish into his pill case so he can “take” his medicine each morning along with me. I know I’ve taken my medicine each day because the pill case is empty. We find rhythm in the routine.

Last Monday, I had my monthly appointment with Dr. G. I’ve been on the letrozole now for a little over two months, and just started my second cycle of Ibrance. I’ve gotten three lupron shots, and my body is fully in menopause. The first week of each cycle, I have noticed a pain flare in my breast and bone lesions (usually the ribs). Each month has been slightly better than the last, and the pain flares are actually a good sign. Still, it’s a rhythm, an anchor upon which we can hold for steady, regularity. Steadiness amidst the waves.

As far as I can tell, I’m tolerating my treatment very well. I seem to have minimal side effects, and the ones I do have are manageable, predictable. Even the hot flashes, by far the most challenging side effect, are starting to be more recognizable. I can find loose patterns in my sleep, diet, and clothing, and mitigate their severity to a degree. Even when I can’t, I know they will pass in a matter of minutes.

Shortly after the first of the year, I began to develop a small skin rash. I didn’t think much of it, as I am often prone to rashes from dry, cold weather. As the month went on, the rash began to spread, flaring up throughout the day and night, impossibly itchy and red. Lotion didn’t help, Benadryl didn’t help, and I figured it was the result of the Ibrance.  At my appointment last week, I mentioned it to Dr. G, who, concerned, immediately sent me to the dermatologist for a consultation. He was unsure of it’s origin, but thought it could be some sort of dermatitis due to increased skin sensitivity from the Ibrance, and gave me a steroid cream. Between that and the cream, the mysterious rash cleared up in a matter of days.

Almost immediately after the rash subsided, I began to notice a telltale scratchiness in my throat, mainly when I swallowed. My glands under my ears began to feel tender, and my chest felt heavy and tight. By the end of the day, I was achy, fatigued, and starting to cough. The next day, my temperature began to creep up over 100 degrees, and I found myself on the way to urgent care, at the insistence of Dr. G, where I received a flu swab, chest X-rays, and blood work. Fortunately, the flu swab came back negative and the chest x-rays showed nothing abnormal as well, but by this point, I had lost my voice from coughing so hard. I slept all weekend, with the hope that I could knock whatever bug this was out of my system, but unfortunately, I just got worse, and developed a sinus and chest infection.

One of the more frightening parts of my diagnosis and treatment is the risk of secondary infection. Ibrance, like many of the drugs given for cancer, tends to dramatically reduce one’s white blood cell count, putting patients at risk for a condition called neutropenia. Neutropenia can be very dangerous, because it means that your body lacks the reserves to fight off infection, and even a cold virus can wreak havoc on your system. Dr. G took this risk very seriously, and I have been in contact with her almost daily to monitor my illness. What seemed like an annoying cold suddenly felt much more serious, and the extent of change in my new normal has been hitting me in waves. It feels very frightening at times, because I feel so vulnerable. It’s not just the cancer now that I worry about, it’s the auxiliary infections, the cold bugs that are part of everyday life with a toddler, that now feel much more insidious, much scarier.

Fortunately, though, my propensity towards stubbornness seems to extend to my white blood cells as well. At my last check, my white blood cell count has remained low but steady, giving me sufficient reserves to fight off this infection on my own. What was just a sinus infection continues, for now, to be just that – only a sinus infection. Well, and a really horrible, hacking cough, that is keeping me up at night.

I’ve spent my week in a haze of seemingly endless coughing fits. It’s only today that things have really turned a corner, and the cough is manageable. Again, it’s nothing I haven’t had before – just a little bit of post-nasal drip tickling my throat, but it’s served as a near-constant reminder of how quickly my body can fail me. I feel more fragile, and the little things seems so much harder. I’m not bouncing back the same way I used to. Just when I thought I had started to fall into a rhythm of our new life, this cold came along.

I’ve generally stayed fairly positive about my diagnosis. I don’t dwell too much in more difficult mental spaces, because I don’t find any value in doing so. I have found a lot of joy in my day to day life, and the small but meaningful routines we have carved out in them. However, I have been surprised at how much this seemingly insignificant cold has shaken me. It has worn me out, frustrated me that it feels like we are struggling so hard to find normalcy, rhythm, routine. It’s always something, which isn’t necessarily a cancer thing, but a life thing. That said, I’m ready for some calmer waters in the weeks ahead, if at all possible. I’m ready to find more rhythm in the ups and downs of our new life.

3 thoughts on “The Rhythm of the Ups and Downs

  1. Thank you for this honest account of what’s happening. Again, I feel the need to tell you how beautiful your writing is, even when it’s about feeling pretty yucky. I’m sorry that you feel so vulnerable. I’m glad that your stubborn white blood cells are remaining steady, even if low❤️


  2. The fear of the former “normal” parts of life, like colds, is something that still haunts me even though my son has been done with his treatment for years. It hangs around, I think because of my trauma surrounding his treatments, anesthesia, surgeries, etc. He couldn’t even have his monthly exams with a cold and we were flying cross country for his treatment during flu season. I’m still hypervigilant about wiping surfaces in public and handwashing. I guess there was not much to control, but I felt like that was one area I could make an impact. I’m glad your counts look good and I hope you feel better each day.


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